(Last updated April 3, 2025)
This Privacy Policy (“Policy”) describes how Decoding Autoimmunity (“Decoding Autoimmunity,” “we,” or “us”) receives, collects, uses, retains and discloses (“Processes”), and protects, your personal information. We may update this Policy from time to time. All changes to the Policy are effective immediately upon posting. Please check back regularly to review any updates.
When This Policy Applies
This Policy applies to the personal information we collect through Decoding Autoimmunity’s website, https://decodingautoimmunity.org/, and any other website on which this Policy is posted (our “Site”). Decoding Autoimmunity is a consortium of leading autoimmune disease organizations, as listed here. The Site is managed by Lupus Research Alliance, Inc. on behalf of Decoding Autoimmunity. This Privacy Policy does not apply to any member organization activities outside of Decoding Autoimmunity.
Our Site may contain links to third-party websites. Please note that when you click on one of those links, you are entering a separate website for which Decoding Autoimmunity has no responsibility. Your interactions with those websites are governed by their applicable privacy policies. Those policies may be different from ours and we encourage you to read them carefully.
Personal Information We Collect
Decoding Autoimmunity may receive or collect your personal information on our Site in a few different ways.
- Information You Provide To Us. When you provide data to us, including when you contact us to get more information about membership or about our projects, you may provide us with one or more categories of personal information, including your:
- Name
- E-mail address; and
- Any other information you choose to provide us.
It is always your choice to provide us with this information. Some of this information, however, is necessary for you to participate in certain activities or events (such as to receive information you have requested). Accordingly, if you choose not to provide the information, your ability to use certain functions of our Site, or to participate in certain activities or events, may be reduced or eliminated.
- Information We Collect Automatically When You Visit Our Site. We automatically collect certain information from you when you visit our Site, such as your Internet Protocol (“IP”) address, your authentication information, the type of device used, the web browser and operating system used to access our Site, the time and duration of your visits, your search queries, and information about the content and webpages you view and the features you access on our Site.
We also use Cookies on our Site. A Cookie is a small text file that is stored on your computer or device when you visit our Site. Cookies are used to collect certain data about your interaction with our Site, including, for example, date and time of access, areas of the Site visited, and number of clicks on the Site. For more information on the Cookies we use on our Site, please see the sections of this Privacy Policy titled Our Policy on Cookies and Related Technology and Retargeting and Interest-Based Advertising.
Personal Information We Do Not Intend To Collect
- Users of the Site from Outside North America. Decoding Autoimmunity does not target the collection of information from persons residing outside North America.
- Minors. Our Site is not intended for minors (children under the age of 16, or the equivalent minimum age in the relevant jurisdiction) and we do not knowingly collect or process personal information from minors. By using the Site, you represent that you are not a minor. If we learn that a minor’s personal information has been collected, we will take steps to promptly delete the data from our records. If you become aware of any data that we have collected from a minor, please contact us at info@lupusresearch.org.
How We Use The Personal Information We Collect
We use the personal information you provide to us to facilitate any requests, communications, or interactions you may have with our Site or Decoding Autoimmunity, including to send you information (e.g., our newsletter or information about becoming a member).
We may also use your personal information to pursue our legitimate interests. This includes to:
- Send you marketing materials via e-mail or postal mail;
- Monitor and improve the information security of our Site;
- Improve our Site and deliver customized, personalized content to you by analyzing trends, tracking users’ movement, and gathering broad demographic information for aggregate use;
- Carry out the mission of Decoding Autoimmunity; and
- Prevent, investigate, or provide notice of fraud, unlawful or criminal activity, or unauthorized access to or use of personal Information, our Site, or data systems, our services, or to meet legal obligations.
We will only disclose your personal information outside of Decoding Autoimmunity in the following limited situations:
- Affiliates. We will share information within Decoding Autoimmunity and our members, and with our corporate affiliates for the purposes set out in this Privacy Policy, such as responding to your inquiry and providing you with information that you have requested.
- Compliance With Laws. We may share your personal information with law enforcement, other government authorities, or third parties as required by applicable law, subpoena, court order or legal process served on us.
- Vital Interests and Legal Rights. We may disclose your information where we believe it is necessary to investigate, prevent, or take action regarding potential violations of our policies, suspected fraud, situations involving potential threats to the safety of any person and illegal activities, or as evidence in litigation in which we are involved.
- Third-Party Service Providers and Collaborators. We may share your information with certain third-party service providers who perform services for us or on our behalf or with whom we collaborate and require access to such information in order to do that work, including, for example, payment processing, data analysis, hosting services and to carry out the mission of Decoding Autoimmunity. We may also share your information with our professional advisors, including legal, accounting, or other consulting services for purposes of audits or to comply with our legal obligations.
- Reorganization of Decoding Autoimmunity. Circumstances may arise where we decide to reorganize or divest part (or all) of our business or a line of our business (or any portion of our assets). We may disclose your information to a buyer or successor in the event of a merger, divestiture, restructuring, reorganization, dissolution, member substitution or other sale or transfer of some or all of our assets, whether in the course of doing business or as part of bankruptcy, liquidation, receivership, or similar proceeding in which personal information held by Decoding Autoimmunity are among the assets, stock or membership interest to be transferred.
- With Your Consent. We may disclose your personal information for any other purpose with your consent, which may be opt-in or opt-out depending on applicable law.
We do not trade or sell your personal information as those terms are traditionally understood, but we may share your personal information with third parties described in the sections of this Privacy Policy titled Our Policy on Cookies and Related Technology and Retargeting and Interest-Based Advertising.
How We Store And Protect Your Information
- Security – Decoding Autoimmunity seeks to comply with applicable laws to protect the confidentiality and integrity of your personal information. We treat certain personal data, such as credit card information, as highly confidential critical assets. To ensure the security of your personal information, the Site employs industry-standard security methods in accordance with applicable laws.
All information provided to Decoding Autoimmunity is transmitted securely with encryption. We also protect your account information by placing it on secure portions of our Site that are only accessible by certain qualified employees of Decoding Autoimmunity.
Unfortunately, however, no data transmission over the Internet is 100% secure. While we strive to protect your information, we cannot ensure or warrant the security of your personal information.
- Retention – Decoding Autoimmunity only retains your information for as long as necessary to fulfill the purpose(s) for which it was collected or as otherwise required or permitted by applicable law.
Our Policy on Cookies and Related Technologies
When you visit our Site, we may use cookies and similar technologies, such as web beacons, tags, scripts, and device identifiers (collectively, “Cookies”) to collect and store analytics and other information. We use Cookies to make it easier for you to navigate our Site, to help us understand how you use our Site, and to display content that is relevant to your interests. You can adjust the preferences in the browser of your computer or device to warn you each time a Cookie is being sent, or to block some or all Cookies. While you may still use our Site if you reject Cookies, your ability to use some of the content and features may be limited.
Strictly Necessary Cookies: These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not then work. These cookies do not store any personally identifiable information.
Performance Cookies: These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies we will not know when you have visited our site, and will not be able to monitor its performance. Our Site uses Google Analytics, a web analytics service provided by Google, Inc. Google Analytics uses Cookies to analyze use patterns and may collect information about your use of the website, including your IP address. More information on Google Analytics can be found here: www.google.com/policies/privacy/partners/. If you would like to opt-out of having your data used by Google Analytics, please use the Google Analytics opt-out, which, as of the date this Privacy Policy was last revised, is available here: https://tools.google.com/dlpage/gaoptout/. Please note that we make no representations regarding the functionality of Google opt-out mechanisms, and further, opting out of Google Analytics will not preclude the use of your data by other analytics services.
Functional Cookies: These cookies enable the website to provide enhanced functionality and personalization. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then some or all of these services may not function properly.
Targeting Cookies: These cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising. Other information on opt-outs for targeted advertisement delivery is available below.
For more information about Cookies, including how to see what Cookies have been set on your device and how to manage and delete them, visit www.allaboutcookies.org, or you may find further information on how to disable Cookies or manage your Cookie settings for the browser that you use from the browser provider.
Retargeting and Interest-Based Advertising
We may use third party advertising companies to place ads on other websites. These companies may use non-personal data about your visits to this and other websites to measure advertising effectiveness and to provide advertisements about our goods and services that may be of interest to you. Like most advertisers, we place advertisements where we think they will be most relevant to customers. One way we do so is by allowing network advertising companies with whom we work to place their own Cookies when an individual visits our site, thus enabling the network advertising company to recognize individuals who have previously visited our Site. When the individual visits a third-party web site on which that network advertising company has purchased ad space, the advertising company can then recognize the individual’s interest in our products and services and deliver one of our advertisements.
The Digital Advertising Alliance maintains a web site where consumers can opt out from receiving interest-based advertising from any of the network advertising companies participating in the program (www.AboutAds.info/choices).
How You Can Access and Control Your Information
You may have certain rights with respect to your personal information that we Process. You may seek to exercise these rights by contacting us at the information listed in the How to Contact Us section below. To the extent required by applicable laws, you have the right to:
- Reject Cookies. If you do not want Decoding Autoimmunity to deploy Cookies when you visit our Site, you may block Cookies by activating the appropriate setting on your browser. For more information on how you can manage your Cookie settings, please consult these sites according to the browser you are using:
If you have consented to our use of Cookies on a Site, you may withdraw your consent at any time by deleting your Cookies using your Internet browser settings.
More information about Cookies, including information about deleting Cookies, may be found at: http://www.allaboutcookies.org.
- Object Or Opt-Out. You may have the right to object to our Processing of your personal information under applicable law. If required by applicable law, we will respond to your request within 30 days (although we may be allowed to extend this period in certain cases).
Where we use your data for marketing purposes, you may opt-out of receiving these communications by clicking the “unsubscribe” link that typically appears at the bottom of our e-mails. You have the right to opt-out of receiving our marketing materials at any time.
- The Right To Access, Update or Modify Your Personal Information. You may have the right to ask us to confirm what information we hold about you at any time. If required by applicable law, we will provide you with a copy of your personal information in a structured, commonly-used and machine-readable format upon your request. You may also have the right to ask us to modify or update your personal information if it is incorrect or incomplete.
- The Right To Delete Your Personal Information. You may also ask us to delete your personal information. Your right to deletion is determined by applicable law and may impact your access to some of the services on our Site. Depending upon which laws apply to your personal information, we may refuse your request for deletion. Under those circumstances, we will explain your legal rights, the basis for our refusal, and any recourse you may have.
- If you Believe That You Have The Right To Lodge A Complaint Outside the United States. If you believe that you have the right to lodge a complaint outside the United States because your personal information Processed by Decoding Autoimmunity subjects Decoding Autoimmunity to legal authority outside the United States of America, please contact us.
How To Contact Us
If you have any questions, concerns or complaints about this Privacy Policy, our Site, or Decoding Autoimmunity please contact us at:
Decoding Autoimmunity
270 Madison Ave., Suite 300
New York, NY 10016
You can also send an e-mail to: info@lupusresearch.org. Please reference “Privacy Policy” in the subject line.